PLAN 1 – wean off Chloral Hydrate completely and begin slow wean off Topiramate.
Well, we met with Dr H this week to discuss the Ketogenic Diet and what our plans are for his drugs. We have always talked about looking at weaning off Topiramate as that and Ketogenic Diet together long-term, may not be good for the kidneys but also Topiramate can cause acidosis in the stomach which can reduce ketones.
But before we reduce Topiramate, Dr H has asked us to start weaning Samuel (and us) off Chloral Hydrate. Now Chloral has been given to Samuel every night at bedtime to help him sleep since he was 8 weeks old. He only has 5mls at bedtime but that certainly seems to be an effective dose. He started having it because he never really had a night and day and Chloral would help him have a good night sleep. Dr H says that it is fine to keep Chloral in our armoury if we should need it, but he doesn’t want Samuel to carry on having it every night, especially as Chloral Hydrate can have a cumulative effect in the body.
So, Wednesday night we started the wean off by halving the dose. Samuel seemed to sleep through the night fine, but the following day was a very different day to his current ‘usual’ days. He was a lot more awake and quite unsettled. Coincidence? Could Samuel be so sensitive to drug changes that it made such a difference to what he was like the following day? I don’t know. But we need to give it more time before we can come to any conclusions. With Samuel one or two days is no way near enough to get a good picture of what’s happening.
So the plan is to carry on weaning off Chloral Hydrate then in two weeks we will start to reduce Topiramate slowly. I’m not sure whether that will be very gradual or whether Dr H will be bold with the pace we reduce it. I’ll keep you posted.
In the past when we weaned Samuel off a drug it was to replace it with another, so not replacing it is a new thing for us. Plus Chloral Hydrate is a really effective drug and has been in our lives so long we are quite nervous about taking him off it. So please wish us luck. x
UPDATE: We got a bit behind on the weaning project because of me being ill so once I was back to normal we decided to speak to the doctor about delaying the wean off Chloral Hydrate and focus first on Topiramate which we saw as the priority. Dr H agreed, so that’s what we are doing. Samuel probably wont be off Topiramate fully until September but at least we have that to look forward to…one drug out of his system was my dream for this diet and we are on the way to getting there!